1.17.2010

I can't believe Lillian is four months already! My goodness time flies. Right now she weighs right around 14lbs and is 24 inches tall. Tomorrow we take her to Riley Hospital for her first surgery. She's getting a G-tube placed. I know it's not a "big" deal, but for some reason PWS kids have a hard time with anesthesia and of course I'm worried about her. Luckily her other doctors are involved and everyone should know the precautions to take with her. She's staying over night until Tuesday and I'm already all sappy about her being away from us. I would hate for her to be there alone wondering where we are.

Today we dedicated Lillian at our church. It wasn't a big long ceremony or anything, just a time when new parents take their babies up on stage and everyone says a prayer for them and we agree to raise them in a Christ filled home. I really hope that Lillian is able to have faith in God to help her with the struggles she will face and to give her guidance to become the wonderful little being she is capable of becoming. There's no way that I, as her mother, can give her all the tools she needs to be patient, loving, thankful, humble and giving (especially when I have a hard time remembering to be that way myself).

So tomorrow will be the first day in nearly 3.5 months that she will no longer have a tube taped to her face, going in her nose and down to her belly. We'll finally get to kiss both of her cheeks as much as we want, and not have people stare at her in public, or that awkward silence people get when they are wondering what in the world is on her face but can't decide if they should ask or pretend then don't notice (seriously, just ask). She won't *obviously* have something different about her. People won't feel sorry for her (or us) when they see us in public and her precious little cheeks won't be red and raw from the tape that keeps her tube in place. We might actually get to feel what everyone else feels when people say "congratulations on your new baby" without a sympathetic look on their face.

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About Me

Hi! This place is where I write down random thoughts and keep track of life's moments.
I try to be an open book and will answer any questions you may have about Prader-Willi Syndrome or being a parent to a child with special needs. I will be the first to tell you to enjoy your life, regardless of the cards you've been dealt!